“Not to fear it. Try to understand it. Accept that it is among us. The best way to fight it is to come together.”

While here at the Boston Living Center, one of my main goals is to get to know members on a collective level; but even more on a personal basis. In order to fulfill this goal I sat down with a member of the Living Center named Jazzz. It was a pleasure to have the opportunity to get to know Mr. Jazzz, with an extra “Z”!

Jazzz is originally from Lewiston, Maine. He lived there until the age of 19. Jazzz has been a member of the Boston Living Center for the past 4 years. Although at first he wasn’t interested in coming to the Center, even after knowing so much about it; he came to the realization that it was “difficult to maintain the day to day routine.” He needed the support of those who fully understood what it means to live with this virus. No one understood what he was going through, so he came to the Center in order “to be in touch with the community. Those who were living with HIV.” Other ways that Jazzz works to maintain his life on a daily basis is through various hobbies. His hobbies include writing poetry and short stories, painting, being a member of the acting group. He also loves traveling, especially international travel. He has been to 5 different continents in his lifetime. He even had the opportunity to study in Mexico.

Just like the music, there are many levels to the person that is Jazzz. I discovered that he recently retired from teaching in the Boston Public Schools after teaching for 27 years. He taught everything from general education to Bilingual education. Yes! Bilingual education! Jazzz is fluent in Spanish! His best advice when learning Spanish is that you go to a Spanish speaking country and immerse yourself in the culture to learn the language.

Jazzz is a very vibrant and well-rounded individual. It was a pure joy to be able to sit down and get to know the wonderful soul that is Jazzz, with an extra “Z”! In closing, I asked Jazzz what he wants the world to know about HIV and those who live with it. His response was “Not to fear it. Try to understand it. Accept that it is among us. The best way to fight it is to come together.” Americans as a society has been known to come together in order to fight injustices, so it is important that we continue our fight against HIV, so that we can get to zero! It is because of the brave men and women, Like Jazzz, who share their stories that others are able to start to tear down the walls of stigma.

Like this:

Written by BLC Prevention and Education Specialist Caitlin O’Gallagher

This is the second portion of my interview with Pat Quinn, BLC member Rob Quinn’s mother. In the first half of our conversation, Pat shared with me her experience learning about Rob’s diagnosis and what she finds most inspiring about Rob’s work as an advocate for people living with HIV. If you missed the first post, catch up here! Here is the second part of our conversation:

Pat had explained over and over again that she just accepted her son for who he was, regardless of his diagnosis, and was there with him through thick and thin. When I asked Pat where she gathers the strength to be such a pillar of support for Rob and his four siblings, she commented that she thinks she was just born to be a mother and doesn’t know how to be anything but loving and supportive to her family.

Pat spoke about families who write off their children when they come out as gay or disclose their HIV diagnosis and reflected on many of Rob’s friends who had that exact experience, and for whom she became “Ma Quinn.” Pat mentioned that she connected, through Facebook, with another mother of a man diagnosed with HIV and that they keep in touch periodically. She shared that she remembered the mother having almost the same reaction to her son’s diagnosis as Pat did to Rob’s: it didn’t matter because he was still her son. Pat remembers being struck by their similar, supportive reactions. We talk so much here at the BLC about the importance of social support and having people in your life that you can talk to about the good stuff, the bad stuff, and all the stuff in between. It’s clear that Pat is able to be a great trusted support for Rob, as well as many of his friends. Both Rob and Pat will be the first ones to tell you how important they have found it to be able to lean on one another. As is clear from Pat’s story, the importance of trusted supports and confidants – whether they are your mother, a friend, an old co-worker, or even your mailman – when receiving an HIV diagnosis and living a healthy life with HIV simply can’t be understated.

In that same vein, I asked Pat what kind of advice she would give to a parent or family member who has a loved one who was recently diagnosed with HIV. Pat was sure to say that she can’t give universal advice because everyone is different and will handle the situation differently, but if she could say one thing it would be, “that’s your child – he’s your baby – and you should love him unconditionally no matter what.” She has seen what her unwavering support has provided Rob and realizes how essential it is.

Pat and I ended our conversation by her sharing with me some of who she is and what she likes to do in her spare time. Pat loves to read, especially when it comes to the newest literature on HIV as well as cardiovascular health, she enjoys watching TV, doing puzzle books, and playing games on her iPad. Pat’s story as a mother of someone living and thriving with HIV was inspiring and really reminded me the importance of having supportive people in your life who are willing to stand by you as you fight the stigma, stand up for what you believe in, and just be whoever it is that you want to be.

Thank you SO much to Pat and Rob for your honesty, openness, and willingness to fight the stigma!

Like this:

Written by BLC Prevention and Education Specialist Caitlin O’Gallagher

Last week I had the pleasure of speaking with Pat Quinn, BLC member and guest blogger Rob Quinn’s mother. When I originally spoke with Rob about becoming a guest blogger for the BLC Soup, he came fully prepared with a ton of really interesting ideas for blog topics, one of which was to share the perspective of a family member of someone living with HIV. Having had the pleasure of learning about Rob’s story as a person living with HIV, I thought it would be invaluable to hear the story from another angle, from the person who Rob calls “his rock,” his mother Pat. Here is a look into the first half of our conversation:

Once we got our introductions out of the way, Pat began by reflecting on her experience of when Rob first told her about his HIV diagnosis. Her initial reaction was shock, she said, but regardless the first words out of her mouth were, “no matter what, I love you and you’re my son.” While Pat’s support for Rob was unwavering from the start, she reflected that misinformation and stigma from friends and family were not uncommon initially. Pat shared, “In the beginning, people would say how you could catch HIV from drinking out of cups and what not and people were always making cracks about gay people and people living with HIV.” She reflected that “so many of his friends called me ‘Ma’ because half of their mothers and families wanted nothing to do with them… Still not many people come out publicly about it.” Pat shared that things have definitely gotten better, especially with their family and friends, as things are “all good now.” However, in the very beginning stigma wasn’t unfamiliar to the Quinns, as is the same for many of our BLC members and their families. Despite Pat’s reflections being many years old, people receiving HIV diagnoses today often still face the same stigma that Pat remembers.

When I asked Pat what was most inspiring about all that Rob has done in his life, specifically the advocacy work that he has done for people living with HIV, she immediately shared that so many people want to hide, but Rob just goes out and shows his face as a person living with HIV. “I wouldn’t do that,” she said, “I give him so much credit.” She said that at first she was hesitant but then she said, “You know what? Go ahead,” because she knew Rob could make a difference and be a role model – plus she was just the kind of mother that chose to support him in everything he did.

When I asked her further about Rob being open about his status to help others, she mentioned that for a long time, when Rob was living in Springfield, he worked with youth at Commerce High School who were struggling with their sexual orientation and, for some of them, their HIV status. Pat shared that Rob went there and showed kids that it’s okay to be who you are and come out to the world as just that. Pat reflected that Rob always says if he can help just one person then he will be happy. When I asked Pat how she responds when Rob shares that, she said, “I’m just so proud.” Putting a face to HIV and being open about his status enables Rob to fight stigma every single day as well as serve as a support and role model for so many people, including those he may not even know personally. Even though Rob received his diagnosis and shared it with Pat years ago, stigma still remains. Rob’s willingness to put a face to HIV, and Pat’s willingness to support him in doing so, are both just as important today as they were two decades ago.

Tune back in next week to read the second half of my conversation with Pat!

Like this:

After attending a webinar on the sentencing of Michael Johnson to 30 years in prison, who was convicted on five felony counts – one count of recklessly infecting a partner with HIV and four counts of recklessly exposing partners to the virus[1] – I decided to do some research on HIV criminalization.

It turns out that when the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was implemented in 1990, it included a requirement that states, in order to receive funding for AIDS treatment and care, had to have laws that could prosecute any HIV-positive individual who knowingly exposed another person to HIV[2]. Although this requirement was removed in 2000, some states still have HIV criminalization laws[3]. Massachusetts, in particular, doesn’t have an explicit HIV-specific criminal statute – but it does have a broad STI sentence enhancement law that has been applied to HIV[4].

Of recent HIV criminalization cases, about 25% of them were for biting, spitting, or scratching, which are actions that do not transmit HIV[5]. Considering that the intent of HIV criminalization laws would be to protect people, it seems like a misuse of resources to prosecute people based on an action that would not and could not harm anyone by transmitting HIV. Keeping these laws indirectly encourages misperceptions about HIV risk and transmission and increases stigma against people living with HIV. This runs counter to all of the progress that’s being made by agencies like the BLC to decrease stigma, promote HIV testing, and engagement and retention in care – to decrease the number of new HIV infections – and really isn’t a constructive way to promote public health.

I want to offer a quote from the National HIV/AIDS Strategy for the United States, an HIV/AIDS policy document published by the White House – which I actually read through on my very first day as an intern for the BLC. It states that “the continued existence and enforcement of these types of laws run counter to scientific evidence about routes of HIV transmission and may undermine the public health goals of promoting HIV screening and treatment.”[6] The new HIV/AIDS Strategy for the United States will be released this month, on June 30th, following its last publication in 2010. I hope that it will place greater importance on updating HIV criminalization laws around the country in order to achieve the three goals outlined in the National HIV/AIDS Strategy for the United States: reduce new HIV infections, increase access to care and improve health outcomes for people living with HIV, and reduce HIV-related health disparities. Updating these laws to reflect the truth could reduce misinformation and decrease stigma – which could make people more willing to be tested, leading to fewer new HIV infections.

As a long-term survivor living and thriving with HIV/AIDS, I am continually seeking out new immune boosting health routines to help strengthen, relax and rejuvenate my body. One of the many services available free to Boston Living Center (BLC) members is a weekly one hour yoga class. Beginners, like me, are welcome. Yoga is an ideal exercise for those of us living withHIV. It is quickly gaining ground as an important complementary therapy in the treatment and management of HIV because of its adaptability and its physiological and psychological benefits. “Yoga is really all about opening up the flow of energy in the body. When the energy is moving freely, we are healing, repairing, and rejuvenating every single cell”. – Claire Diab, Yoga Therapist.

That being said, I signed up and took my first class on Wednesday, March 25, 2015 and have been with the BLC group ever since. I am on my way to becoming a yogi, even purchasing my own mat. Yoga asks us to come to the mat with a curious mind and an open heart. It teaches practical skills to eliminate stress and support immune function for enhanced health and greater quality of life. The integration of body, mind and spirit makes the practice a natural partner to combat HIV/AIDS by building muscle through movement and stress release via meditation.

Like HIV-positive people, yoga comes in many forms. As a beginner, I am practicing iyengar yoga which has an emphasis on detail, precision and alignment in the performance of posture (asana) and breath control (pranayama). The development of strength, mobility and stability is gained through the asanas. Iyengar yoga is great for learning the subtleties of correct alignment. Props – meaning mats, blankets, bolsters, blocks and belts– help us beginners get into poses with correct alignment, even when they’re new to us, injured or simply stiff. Most yoga practices conclude with the savasana pose (my personal favorite), in which practitioners lie on their backs, arms and legs out, with closed eyes, and take deep pranayama breaths.

Through my continued yoga practice, I am optimistic, confident and determined that I will expand my tools to better “control the controllable.” I know and accept the fact that I cannot control my HIV status. However, I can control the co-factors or issues that can impact the health of my immune system and ultimately lead to optimal health outcomes. I don’t live with HIV, HIV lives with me! Yoga is also about self-empowerment, through a sense of standing on my own two feet and working on my own rather than having someone else do the work for me. Yoga provides a way to bring mindfulness into my daily life. It helps me to slow down and look at life week by week, day by day, hour by hour; using what I have, not always wanting more; learning to live in the moment.

Other things I am gaining from my yoga practice include strength, flexibility, concentration, increased self-awareness. Yoga asanas, relaxation techniques, and breathing exercises can help focus the attention and reduce mental “chatter.” By becoming more aware of my own body, mind, and spirit, I can also experience profound spiritual growth. I believe it is the spiritual aspect of yoga that has enhanced my ability to accept that there is so much beyond my control. It helps me realize, somehow, to further trust in a higher being.

A yoga practice can bring positive changes to your day even after ONE class. Some benefits you’ll notice right away include: a calmer mind, body awareness, and an awakened connection with LIFE. Yoga practices will change your mind and EMPOWER you to meet your true potential. Bottom line, yoga feels good. Please consult with your health care provider before beginning a Yoga practice. BLC members, sign up for Yoga every week by visiting the front desk or call 617 236-1012 ext. 0, to reserve your place.

After a long awaited interview, I sat down with BLC member JoAnne C to discuss stigma and the importance of education in HIV communities. The following dialogue is from my conversation with JoAnne.

How long have you been a member of the BLC?

“Well my official badge says 1999, but I’m pretty sure that I’ve been here since 1995. It’s been a long time.”

How has the BLC changed since you have been a member?

“I know way back when I came here it was just like all gay men. I mean they had female staff members and they tried to promote things, but I don’t think at that time a lot women were actually utilizing the services.

“I know that when I came back here and joined the CAB, we tried to get things going for women. So it’s had it ups and downs.

“But, I love when I see new women here. I love when I take Healthy Relationships and there’s a woman in there for the first time trying to navigate through this, and it’s like, ‘You have all the help right here.’ You know?”

In what ways has HIV affected your life?

“Well, I say all the time that HIV saved my life. The resources that I’ve received- I mean it’s kept me housed, it kept me in health care, it even helped [get me] into recovery. I just knew what to do because I landed in an HIV positive program, or a program for HIV positive clients, and they told me, “go to the Boston Living Center, go to AIDS Action, ask questions.”

Have you ever experienced HIV-related stigma?

“I don’t give stigma much thought, I really don’t. I mean the stigma is definitely there because the basic citizen of the United States has no – until they’re affected by HIV- they’re not really educated on it. And, people really have no concept of it.

“You really have to embrace this [diagnosis]. It’s just a piece of me – like my eyes are brown, okay my eyes are brown – I can’t change that. I can’t change the fact that I have HIV so I have to find a way to live with it. “

Do you think that there’s stigma within the BLC community?

“I don’t think it’s within the BLC as far as status is concerned… It’s just like another family, you know? We become a family, and we don’t even know it, and as far as stigma within the BLC? I don’t think so.”

I would like to thank JoAnne for sitting down and taking the time to tell me her story. As a longtime member of the BLC, she has a lot of insight to offer and she gives a positive spin to any situation that she comes across. It was a pleasure interviewing her and discussing her perspectives.

Like this:

By Caitlin O’Gallagher, Prevention and Education Specialist at the Boston Living Center

The doors of the Boston Living Center swing open every day to welcome the individuals who make up the core of this organization. Artists, teachers, activists, cooks, mothers, poets, fathers, students, professionals – they all walk through our doors. Each of these people comes in with a different conversation to be had – let me tell you about the bike ride I just took, or did you see that article in the Metro this morning? At the end of the day, what they each have in common is that they are HIV positive. But it’s what’s beyond that diagnosis and label that makes each of these people uniquely different and imperative to the colorful tapestry that is the BLC community.

In many causal conversations out in the world about the HIV positive community, we hear language that insinuates that once a person becomes HIV positive, that diagnosis becomes their identity. They not only have HIV, but they are now defined by their HIV. But in many conversations within the HIV positive community, we hear that whereas the diagnosis may become a part of the person’s identity, it by no means becomes all that that person is. One of our members here often says that he has HIV, but HIV does not have him. That saying sums it up perfectly; yes, HIV is a part of him, but it’s not all of him.

Members here sometimes tell me that they are sick of talking about HIV. We hear it all the time, they say, we’re bombarded with conversations about it every day between all of the different services we receive. Why does this constant conversation about HIV get on their nerves? Because they are still people – people with hobbies and interests, people with senses of humor, and people who often have more pressing, immediate issues to tackle than an HIV diagnosis. Sometimes they just want to be able to talk about other issues and parts of them that aren’t their HIV. And shouldn’t that be okay?

So let’s look beyond the diagnosis. Yes, it’s still absolutely necessary to be talking about HIV, to be educating people about HIV, and to be having honest conversations with people about HIV. This is how we confront and combat stigma. But it’s also important to talk to these same people about the other parts of their lives. This is also how we combat stigma. And how’s the new apartment coming along? How did that interview go the other day? How’s your new pottery project coming along? When we address people as people, and not a diagnosis, we combat the notion that people are their HIV.

Here at the BLC, we strive to do just that. We infuse education, support, and learning opportunities into our interactions on a daily basis, but we also remember to check in with people about the million other important or seemingly mundane things going on in their lives. This is where true support lies. I will talk to you about your viral load, your medication side effects, and your CD4 count, but I’ll also talk to you about your family, your cat, or what you cooked for dinner last night. To form a community that is sustainable and has real impact on its members, conversations and support must be all-encompassing.

Let’s move beyond pigeon holing people and move into a space where we can instead be comfortable allowing people to decide for themselves what their most important parts are. I invite you to think about how to see individuals beyond their diagnoses and how to engage and interact with the whole person, not just one part.